Evaluating the consent preferences of UK research volunteers for genetic and clinical studies.

OBJECTIVES: To establish the views of research volunteers on the consent process; to explore their views on the consent process in different research scenarios; to inform debate on emerging models of consent for participation in research. DESIGN, SETTING AND PARTICIPANTS: 2,308 adult volunteers from the TwinsUK Registry (www.twinsuk.ac.uk) completed an online survey about their views on the consent process for use of their DNA and medical information in research. Their views on the re-consenting process in different scenarios were assessed. RESULTS: The majority of volunteers preferred to be informed of the identity of the main researcher of a study in which they are participating, which is contrary to current practice. Over 80% were willing to complete the consent process online instead of face to face. On the whole, respondents did not view their DNA differently from their medical information with regard to the consent process. Research participants were more willing to give broad consent to cover future research if their DNA was to be used by the original researcher than by another researcher, even if the disease under investigation varied, in contrast to the traditional 'gold standard' whereby specific consent is required for all new research projects. DISCUSSION: In some scenarios, research participants reported that they would be comfortable with not signing a new consent form for future research uses of their data and DNA, and are comfortable with secure, online consent processes rather than traditional face-to-face consent processes. Our findings indicate that the perceived relationship between research participants and researchers plays an important role in shaping preferences regarding the consent process and suggest that this relationship is not captured by traditional consent processes. We argue that the development of new formats of consent should be informed by empirical research on volunteers' perceptions and preferences regarding the consent process.

Female interpersonal dependency: genetic and environmental components and its relationship to depression as a function of age.

OBJECTIVES: Research has shown that female interpersonal dependency is significantly associated with clinical depression but is only marginally related to childhood environmental factors. This study replicates the finding of O'Neill and Kendler that such dependency has a significant genetic component and no shared environmental component and extends this by examining the effect of age and the relationship between interpersonal dependency and depression. METHOD: A genetic model analysis for female twin pairs was made incorporating a scale from the Interpersonal Dependency Inventory, and the association between dependency quartiles and depression for both sexes determined. Dependency data were obtained by questionnaire from 4427 monozygotic and dizygotic twins, 90% female and this was combined with lifetime incidence of depression data in three categories of severity. RESULTS: Additive genetic variance components of 49% and 41% were estimated for those females between 19-64 and 65-87 years, respectively, with no significant effect for the shared family environment for either age group. Only female dependency was found to be associated with the incidence of depression. Incidence levels of severe depression for older females in the highest quartile of dependency were 26% compared to 43% for the younger females. CONCLUSION: The investigation has estimated that nearly half of the variance in female interpersonal dependency is genetic in origin. It has also confirmed that high levels of such dependency are associated with the incidence of severe depression and this effect reduces with age. The possible reasons for this age-related effect are discussed.

A survey of UK public interest in internet-based personal genome testing.

BACKGROUND: In view of the increasing availability of commercial internet-based Personal Genome Testing (PGT), this study aimed to explore the reasons why people would consider taking such a test and how they would use the genetic risk information provided. METHODOLOGY/PRINCIPAL FINDINGS: A self-completion questionnaire assessing public awareness and interest in PGT and motivational reasons for undergoing PGT was completed by 4,050 unselected adult volunteers from the UK-based TwinsUK register, aged 17 to 91 (response rate 62%). Only 13% of respondents were aware of the existence of PGT. After reading a brief summary about PGT, one in twenty participants (5%) were potentially interested at current prices (£250), however this proportion rose to half (50%) if the test was free of charge. Nearly all respondents who were interested in free PGT reported they would take the test to encourage them to adopt a healthier lifestyle if found to be at high genetic risk of a disease (93%). Around 4 in 5 respondents would have the test to convey genetic risk information to their children and a similar proportion felt that having a PGT would enable their doctor to monitor their health more closely. A TwinsUK research focus group also indicated that consumers would consult their GP to help interpret results of PGT. CONCLUSIONS/SIGNIFICANCE: This hypothetical study suggests that increasing publicity and decreasing costs of PGT may lead to increased uptake, driven in part by the general public's desire to monitor and improve their health. Although the future extent of the clinical utility of PGT is currently unknown, it is crucial that consumers are well informed about the current limitations of PGT. Our results suggest that health professionals will inevitably be required to respond to individuals who have undergone PGT. This has implications for health service providers regarding both cost and time.

Normal variations in personality are associated with coital orgasmic infrequency in heterosexual women: a population-based study.

INTRODUCTION: As many as 20-30% of women report an inability to orgasm during sexual intercourse. Some female sexual problems have been reported to cluster with psychological and social problems. Underlying personality type may play a role in the development or maintenance of such problems. AIM: The aim of this study was to investigate whether certain domains of personality are associated with female coital orgasmic infrequency. To our knowledge this is the first such study in a large unselected population. METHODS: A total of 2632 women (mean age 51) from the TwinsUK registry completed questionnaires relating to personality and sexual behavior. Personality domains were assessed using the validated Ten-Item Personality Index (TIPI). Coital orgasmic frequency was measured using a seven-point Likert scale. MAIN OUTCOME MEASURES: Using logistic regression, we investigated whether variations in five domains of personality are associated with female coital orgasmic infrequency. Discordant twin analysis was used to verify findings. RESULTS: Introversion (odds ratio [OR] 2.5, 95% confidence interval [CI] 1.7-3.7), emotional instability (OR 2.0, 95% CI 1.3-3.1), and not being open to new experience (OR 2.4, 95% CI 1.6-3.6) were significantly associated with orgasmic infrequency, whereas indices of agreeableness and conscientiousness were not significantly associated with orgasm frequency. CONCLUSION: Specific personality subtypes appear to be significant risk factors for orgasmic infrequency. Consideration of these behavioral risk factors may need to be incorporated into research into female orgasmic disorder, and possible approaches to its treatment.